MND Association

I hadn’t fully realised that the majority of the key NHS people I’ve been seeing are funded by the MND Association! In fact the MND clinic that I attend every three months doesn’t cost the NHS a penny. So the MNDA not only fund research, fund equipment but they also fund positions in the NHS with wonderful people and that makes life as comfortable as possible for people like me and our families. We love the MNDA!
So we must raise loads of money for them! Even a fiver would help. Thanks.

Our story was featured in the latest MNDA campaign. (click here to see latest campaign)

Here is a team photo of the wonderful people that have been looking after me:

I can’t imagine living in a country where you don’t get free healthcare at point of use and I can imagine that this would cost a lot of money if I had to pay. The whole team is wonderful and so positive.

So how many people does it take to look after one person with MND?

Oxford unit:Consultant Profs Talbot and Turner
Initial Diagnosis and I see one of them every 3 months at the MND clinic at the West Wing of the JR Hospital Oxford.

MND Nurse – Rachael
I see at every clinic appointment, but I know I can contact her at any time with queries. Always very positive!

MND clinic visitors – are there coordinating the MND clinic and make the whole experience friendly. They know where you are meant to be and generally look after you in the clinic: Lesley, Dave and Penny – all MNDA volunteers!:

SALT: Charlotte – Speech and Language Therapist – making sure I don’t take too many risks while eating and showing me techniques to get the most out of my lousy swallow.

SALT : Tracy and Gemma– I banked my voice with Tracy last year in August – and now I’m using a tablet called a Grid Pad to aid my speech which sounds a bit like me.

Clinic Dietitian Laura and the community Dietitian team. I had a PEG feeding tube fitted in November last year and now I’m using it to get the nutrition. I eat a small amount “for pleasure” – mainly chicken tikka masala and various chocolate puddings.

Occupational Theapist: Jenny:
I’ve just started seeing Jenny as my neck is starting to get weak and painful towards the end of the day. I have just received a Sheffield Snood – or Head up Collar.

GPsManage my day to day needs including various courses of antibiotics in January and adjusting puffers. They recently gave me a pink puffer – which actually tastes pink.

Oh and last but not least..

My own private nurse / wife, Julia in between nagging me to stop choking she makes sure I get the best care and reads up on what we should be doing to make my quality of life as good as possible. I never imagined marrying a nurse all those years ago would be so useful!

I finally went to an MND Association meeting in Oxford! I had been reluctant to go to meetings in the past as I was concerned that I may get a distressing view of what’s coming in the future.

But I plucked up courage and went along with Julia.

The meeting started with two talks; one on work the occupational therapists are doing to get wheelchairs to MND patients quickly. In the old days it used to be a 2 year wait! Not really an option with this fast-moving disease. And then it was really tricky to get all the parts together for a suitable wheelchair to satisfy the person’s needs, and because the disease is progressing those needs may have changed by the time the wheelchair arrives. So they set out to work with the three main manufacturers to make a standard Neuro-chair with everything on there the person may need. It has sped up the process, simplified the ordering process and means they have everything to adapt the chair as things change.

The second talk was on biomarkers. These are markers in spinal fluid or blood that could lead to a test for MND / ALS. At present there is no blood test or scan that can show if a person has MND and so it is a process of ruling out other diseases and that takes time. So the researchers have done a series of tests to find biomarkers in the blood and correlate with MND and contrast with healthy individuals and also diseases that mimic MND. The results look promising and they are kicking off a study across two centres to get plenty of data and a reliable test.

And then we got a chance to chat with people living with MND, their families and the volunteers that run the MND association.

It was good to chat to Lesley Ogden, lovely secretary of the local branch of the MNDA , a friendly voice at the end of a phone right after I got the diagnosis in July 17, who also sent me loads of useful info. She is planning an event in South Oxfordshire and it might be in Abingdon. Handy for me.

One guy had very limited mobility and loads of gadgets. When I found out that he was fiercely independent and lived on his own I was seriously humbled. It made my symptoms feel like they were relatively mild in comparison. Apparently he can control his whole house from his tablet; now I have to see that!

Some had the slow variant of MND, PLS, and had had it for over 10 years.

Some needed wheelchairs and some were like me; it had not impacted their legs.

It was great to compare stories and challenges we had faced. One person had a similar onset to me; starting at the top of the body and working down. However it had impacted her arms first and she first noticed it when she had trouble putting the washing out on the line. After several months of no one believing her, she got the diagnosis. She also had difficulty getting her coat on and recounted funny stories of asking strangers on a train to help her put her coat on with varying degree of success. Some people were only too happy to help, while others thought she was a nutter!

And a few people had faith in God – good to see I was not on my own. It will be interesting to see how it has affected their faith.

On the Sat 11 Nov 2017 we did a sponsored silence. The MND Association run a campaign every October called #silenceSpeaks to raise awareness of the fact that over 80% of people living with MND / ALS will lose their speech and have to find alternative means of communication.

We decided to do it as a family so that the boys could experience what we may face later – and we went for 24 hours, starting around 8pm Friday. We named the team after our house; Loud House.

Getting the boys together for a team photo was a challenge…

The rules were you couldn’t speak but had to find alternative ways to communicate. The boys soon found apps on their phones and started pre-programming inappropriate insults to use at the press of a button. We also found loads of Sound Boards – Homer Simpson was my one of choice. Plenty of “OK”, “Uh-huh”, “Yeah”, “Yeah – probably” – so it sounds like you’re listening.

About 8pm Friday night we started. I was out down the pub… so that was interesting. Noisy environments make it difficult to hear the text to speech on the phone so I tried typing and passing round the phone.

Saturday the house was unusually quiet..

We had some group discussions using our text to speech apps… and it was chaos. By the time you had typed your reply in someone else had asked a different question.. and the phrases that the boys has pre-programmed were all rude and unsuitable .. so lots of laughing had by all.

We went to the Barns Cafe

Again difficult to hear the phone app, a bit of pointing and nodding and Emma doing some talking for us to decipher what we were after.

Just realised how difficult it was to say “thank you”. In normal life people expect you to talk and reply back to them quite quickly. We must have seemed quite rude.

I guess if you lost your voice people would get to know you and take time. Maybe. Or perhaps you’d be reluctant to go out.

What did we learn at the end of 24 hours of relative quiet?

Talking through Text to Speech apps makes your fingers ache

It is quite difficult to shout up the stairs to get the boys attention.. maybe we need some kind of air horn?

It is very slow to communicate without speech

The final thing we learned was the generosity of friends; in the end Team Loud House raised just over £3,000 ! – Amazing!

The MND Association also said we were one of the highest fundraisers for this year’s #silenceSpeaks.

On a personal note. I’ve recorded my voice using voice banking. I used Model Talker but there are a few around. It’s a clever system where you record 1600 phrases and then a computer uses that to create a model of your speech. You can use that model in Text to Speech software to produce a voice that sounds like you… and it does sound just like me! I was amazed. Obviously you have to record your voice well before the MND has a chance to impact it. So thinking ahead is essential.